The Plight of Orphan Conditions

Just recently a huge gift was bestowed upon me. The gift of no co-pays for Nicky’s supplies. This is no $20 co-pay, this should have been in the hundreds, even thousands (supplies come with a 30% co-pay), making taking care of Nicky almost impossible to afford.

This was all in all a “new” issue I was dealing with. Since the ACA passed, insurance companies have been looking for ways to make more money, since their priorities lies with the stockholders and not the sick, so as of a couple of years ago supplies went from 100% covered to only 70%. Because, as we know, the sick are wealthy. Yes, that is sarcasm. While the supplier waved the co-pays until it could no longer due to new regulations, the g-tube supplier didn’t, leaving me to purchase Nicky’s food and g-tube supplies off eBay.

Luckily, and I don’t say this lightly, a caring woman who knows enough about the plight of EB families, told me that if Nicky had Medicare (or Medical since we’re in California), they would pick up the tab of the co-pay the insurance requires. After a couple of months of back and forth emails and phone calls, it was all true and when the supplies were dropped off at our door last week I couldn’t stop smiling and running around like a crazy mad, happy woman.

This is the plight of orphan conditions. Because they are rare, nobody knows how to get the Insurance to cover things that are necessary and the information has a hard time getting around.

It doesn’t take much to make me happy. All I want is the supplies to keep Nicky as healthy as possible. These are not luxuries, as without them, I am not sure I could sit here and tell you my son is alive and well. Well… as well as he “could” be having the worse form of RDEB.

Just last week our favorite Nurse Practitioner told us that “all things considered”, Nicky is in fairly good health. She told us that when she saw Nicky’s wounds and body, he seems to be 75% better than most they see, even though he’s one of the very few that cannot walk. This does not mean Nicky has no wounds, or he’s not in pain, it just means he’s stable and we learned how to keep his body as wound-free as possible as this is our #1 concern. No wounds means no cancer & no infections.

Just in the past year, I’ve been able to get his left knee completely heal for sometime, a first in over a decade. Of course, a mere week after, his entire thigh broke out in an enormous wound and his whole leg from the knee down was a disaster, but his knee was healed! Sometimes we have to be thankful for the small things. As I write this, that leg is looking pretty good, it’s possibly only 10% open wound, that can change tomorrow, but for now, we’re happy.

As I wrote in the book, I am not sure why some patients can walk fine for a long time and Nicky cannot. I have certainly met a handful of patients who either never walked or walked for a very small amount of time as well. All I know is that the pain he has on his feet is beyond excruciating, despite the fact that his feet are not raw and don’t look too horrible most of the time. I’ve certainly seen the feet of other “walking” patients in much, much worse shape than his and I don’t have any answers.

Nicky’s feet are certainly small for his age and size, the ball of his foot is extremely weak and raw most of the time. His ankles have been raw or partially raw since he was born. We may get them healed for a week or so and they blister up open again. I’ve come to the conclusion that anything that was badly damaged when he was an infant or was small it’s his worse spot now. His ankles, forearms, mouth. Those were horrible at birth or when he was little. They are not much better now. But as long as I have the supplies to keep him comfortable and happy, I can’t really ask for anything more. And I will gladly walk through glass to make sure he’ll keep getting them!

Love and Light,

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About Me

Hi!

I'm Silvia.

I am the mother of 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.Read more...

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